The primary objective of this K23 research project is to prepare Jennifer K. Walter, MD, PhD, MS for her long- term goal of becoming an independent physician-investigator testing interventions in the field of cardiac disease and pediatric palliative care. Her immediate goal is to obtain the training, mentorship, and research experience necessary to successfully compete for R01 grants supporting intervention studies in this area. To meet this goal, Dr. Walter and her mentors have developed a comprehensive career development plan that includes: 1) advanced training in modification of clinician and team behavior, simulation-based team training, rigorous quantitative and qualitative methods, and study trial design to evaluate bio-behavioral interventions; 2) intensive mentorship from a team with whom Dr. Walter has a track record of collaboration and scholarship, including Chris Feudtner, MD PhD MPH (primary mentor), Vinay Nadkarni, MD (secondary mentor), Martha Curley PhD RN FAAN, and Robert Arnold, MD (advisory committee members); 3) protected research time in an institution that has successfully supported numerous junior investigators; and 4) an innovative research plan to develop and test an intervention with both CICU parents and teams that aims to optimize communication in family meetings to better achieve patient, parent and team outcomes. Pediatric advanced heart disease is a leading cause of non-accidental death for children. The children that die do so in the cardiac intensive care unit (CICU), where many parents report being unprepared for the death and as a result, are unable to make goal- concordant decisions. Thus, there is a critical need to create evidence-based interventions that support teams and families in effectively communicating about treatment goals. To achieve this objective, Dr. Walter will identify a cohort of parents of patients with advanced heart disease and clinicians regularly attending interprofessional team meetings in the CICU who will participate in family meetings. With this cohort, Dr. Walter will: 1) Use co-design methods working with parents of CICU patients and interprofessional team members to custom adapt an intervention called CICU Teams and Loved Ones Communicating (CICU TALC) to improve CICU family meetings; 2) Assess the acceptability and feasibility of CICU TALC on parent, patient, and team outcomes with 20 clinicians and 46 parents of CICU children; and 3) Test the impact of CICU TALC on team and parent behavior in family meetings. The findings will provide evidence to justify a pragmatic step- wedge methodological approach for a fully powered trial of CICU TALC. The research and career development activities outlined above will take place in the collaborative academic environment of the The Children's Hospital of Philadelphia and the University of Pennsylvania Perelman School of Medicine with the support of a team of nationally recognized mentors and advisors who will ensure Dr. Walter's success.
Pediatric patients with advanced heart disease and their parents can experience inadequate communication with the clinicians caring for them thereby hindering goal-concordant care via shared decision making. This proposed research will 1) customize a family and team based intervention to improve communication in the cardiac intensive care unit and 2) evaluate the intervention designed to optimize communication around goals of care. Knowledge gained from this study will guide future interventions to improve outcomes for pediatric patients with advanced heart disease and their families.